Friday, July 30, 2010


I have noticed some jumps in Payton's speech and communication over the past few weeks ... I'm not sure what has prompted it, but I'll take it!

Her favorite new word is 'boy' ... she calls Mason 'boy' and it gets on his last nerve. Ha. 

"My name is Mason!"

She doesn't care what he says. Ha.

The way she says 'boy' ... boieee. So cute. And 'blue' ... that is her new favorite color ... everything she wants is bluuuu.

Here she is, little stinker ...

Tuesday, July 27, 2010

The mullet.

Payton, Payton, Payton.

Girl ... you better run!


I understand that you wish you were Nika's mommy ... BUT, you are NOT ALLOWED TO CUT HER HAIR!!


Lord help me, my kid now has a mullet.


Monday, July 26, 2010

Love you Momma.

Having a child ... or children ... with special needs frequently exposes you to a world that many people never get to see ... or never take the time to see. A multi-faceted world.

Every day of my life, I hear stories of children being diagnosed with leukemia, diabetes, moya moya disease, atlantoaxial instability, apraxia and more. I hear stories of children receiving developmental therapies several times per week, having g-tubes placed, being fitted for orthotics and more.

This is my world. This is my reality. And it sucks.

But no matter how routine the stories become, sometimes we are blindsided. We are blindsided when we are more directly affected by something like leukemia.

Chronic myelocytic leukemia (CML), to be exact. Those are ugly words, right there.

My best friend ... McKenna ... has been diagnosed with CML. And I have been rocked to the inner core of my soul. Blindsided, to be exact. McKenna is my soul sister ... we are like two puzzle pieces that make the puzzle complete. Our similarities are quite scary, to be honest. Ha. And that is why I love her so.

Please join me in prayer for McKenna, her husband and her three beautiful children. I am confident that if anyone can conquer CML, it is McKenna. I am prepared to grow old with this girl and ain't no damn cancer cells gonna change that.

Love you Momma. 

Sunday, July 25, 2010

The most magical place on earth.

When I was growing up, one of my favorite things to do was to visit my grandparents in Florida. They lived an hour from Walt Disney World and like every other kid, it was one of my favorite places to go. It is the most magical place on earth, no?

My kids are lucky enough to have their grandparents now living near Walt Disney World, so Mason and Payton have been several times. Last week ... however ... we were there for an another reason.

For the past several years, we have attended the National Down Syndrome Convention ... and this year, it was held at Walt Disney World. What could be better than mixing all things Down syndrome with all things Mickey?

We have not been on a plane since before we adopted Nika ... the kids were so excited and it was fun to fly with Mason, now that he is a little older and understands the concept of flying.



Since we have always had family living so close to Disney, we have never actually stayed at a Disney resort. Until now. We stayed at the Coronado Springs Resort, which is where the Down syndrome convention was held.


We vacationed with friends and took my cousin with us to help care for the kids in the evening ... ya know, so we could have adult time. It was so nice to be able to spend that time with our friends without having to keep track of the kids.

Our first day there, we tackled Magic Kingdom. It was so hot ... and so magical! Ha.



Buzz Lightyear ... one of our favorite rides. Who doesn't love the black light effect?





It's a Small World ... quite possibly the most nostalgic ride at Walt Disney World.


And because I know you want to be singing it's a small world after all ... live streaming ...

Mickey's house ...


We got disability passes for the girls ... it was such a lifesaver. Aside from allowing us to not have to keep the girls entertained in long lines and trying to prevent Nika from overheating ... we did not wait longer than 10 minutes at any attraction ... and that included the character meet and greets.


I noticed that the characters took extra time with our girls, took extra pictures and just stepped it up a notch. After hearing later that they tend to do this with kids who have disabilities, I thought that was pretty awesome. Not that I think my girls deserve any more attention than Mason or any other kid does, but I can't lie ... it is nice to have them get a little extra attention given their hurdles in life.




The kids were troopers the entire day. No meltdowns when meeting characters, they braved all the big rides ... we really had a magical day. Ha.


My absolute favorite ... the electrical parade. I wonder how much it has changed since I was a kid?





The $15 rip off light up thing-er-ma-jigs ... we brought some with us, so how is it that we had to buy more when we got there? Sigh. I think it completes the atmosphere of the parade ... yeah, that's it.



And nothing tops off a night at Magic Kingdom like fireworks at the castle ...



Thursday, July 1, 2010

Peace. And chaos.

As I sit here overlooking the ocean from a couch in my aunt and uncle's ocean front home, I feel the desire to blog. To try to catch up my blog. It is raining outside, but ain't no rain gonna stop my husband and kids from catching waves in the ocean. And here I sit, watching them pounce on the waves from afar.


I'm pretty sure I have not felt peace like this in a long time.

Our life is chaotic, there is no doubt about it. Sometimes I sit back and wonder what our life would be like without having to sit through six speech therapy sessions, four occupational therapy sessions, two physical therapy sessions, countless doctor appointments and so on per week. Knowing the alternative would not include my girls, I am happy to live the chaos.

But having peace every once in awhile is so nice.


My dearest daughter Payton.


Several months back, we began to think Payton had Childhood Apraxia of Speech. We had her evaluated at the Down Syndrome Speech and Language Center for Excellence at Loyola College Columbia Center, which was founded by Libby Kumin ... who in my book is the Down syndrome/speech guru. The evaluation was very extensive and informative ... and she was officially diagnosed with apraxia. 

Since that time, we have added a PROMPT certified speech therapist into our regime ... and Payton has come so far. She still has a really long way to go, but it is so nice to see her making progress. Knowing that she will be starting kindergarten next fall has sort of put me in a panic to get her all the help we can to get her talking before then.

In conjunction with all of this, we finally decided to have her seen at a craniofacial clinic to see if indeed she has a submucous cleft palate. The history on that is when she had her tonsils and adenoids removed back in February 2008, her ENT noticed that she has a bifid uvula ... which is sometimes indicative of a submucous cleft. Although Payton's palate was palpated at that time and no evidence of the cleft was found, her ENT left some adenoid tissue in tact as a precaution. 

Given her ongoing speech delay, we just really wanted to know if she indeed was dealing with a submucous cleft. At the clinic, we saw numerous specialists ... a craniofacial surgeon, an ENT, an audiologist, a pediatric dentist, a speech therapist, a pediatric orthodontist and others I'm forgetting. The bottom line was that everyone was satisfied with Payton's progression. Given the fact that Payton can produce certain sounds, the speech therapist did not feel that she has a cleft. We left not having a 100% answer, but agreed with the craniofacial surgeon in that we will never know for sure until Payton will allow us to stick a camera up her nose so that they can see her palate.

A couple years ago, Payton was diagnosed with moderate sleep apnea and restless leg syndrome. After removing her tonsils and adenoids, her apnea was reduced to mild. A few months ago, she had a follow up sleep study done. And now ... she has severe sleep apnea and she still has restless leg syndrome. Groan. The average between her apnea and hypopnea incidents is 24.5 per hour.

Cue the BiPAP.

The day after we received her diagnosis, we had someone in our home installing Payton's new machine and instructing us on how to use it. We get one month to desensitize her to the mask and then we will go through an overnight study using the BiPAP to figure out pressures or something like that. 

Surprisingly, she has done very well. We have a daily schedule that tells us how to introduce it to her and she is moving faster than they expected (i.e. let her play with the mask for week one then move into having her put it to her face for like 3 seconds). She has already fallen asleep several times with the mask held to her face by her Daddy ... the hardest part seems to be getting her to wear the headpiece that holds the mask in place. 

She is making progress and that is all that matters. We are very hopeful that allowing her to get a better night sleep will affect her cognition and her speech. It might be a long shot, but that is what we are going for.


The girls will both be attending preschool this fall through the county Child Find program. We recently revisited each of their IEPs and requested placement for both of them in peer modeling programs, which is what Payton was in this past year (i.e. 6 typical children, 6 children with special needs). I felt confident that Payton would get the placement since that is where she was last year, but I was not so sure about Nika. But she got it and I am beyond thrilled!  

The girls will go five days a week to different schools, so as to not have them in the same class. I think it would inhibit both of them so this was a request that I made that was granted.


Onward and upward ... the beach awaits!